A Self Advocate Fights Oppression

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Fuck You For Wishing You Could Fix Your Child

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The first draft that I wrote of this post was not fit for general consumption. It was angry. It was heartbroken. I furiously typed out a thousand words in fifteen minutes with tears streaming down my face in grief and fear because I didn’t know how to respond to another autism parent acting as if autism is the enemy.

But I gave it a day or two, and I can engage with the topic again, and so here we are. I think it’s incredibly important to genuinely engage with the fear that autism parents feel without letting them say damaging things, and that is what I aim to do here.

Here’s what I want to push back on: autism parents who in the name of being honest say that they wish their kid could be fixed, that they had to give up on dreams of a certain career or of their child graduating college or high school, that they are giving up hope, or that quality of life just isn’t enough. This post was inspired by one video in particular, but I’ve heard so many parents use the same phrases, or talk about how their child will never do x and that no one else will understand that. Particularly that autistics like me won’t understand that.

My autism is not visible. It’s not “severe”. Many people don’t even believe I am autistic. They think that I don’t get what it’s like because I have a job and I own a house and I’m married. They think that the pain they feel when looking at their severe kid is justified because they’ve had to give up dreams of raising a lawyer or a doctor, of it ever being easy, of being normal.

And honestly I’m so fucking tired. I’m so fucking tired of being looked at like I don’t belong in the disability community because I don’t wear it on my sleeve. And I’m so fucking tired of parents thinking that I’m better than their children because I’ve checked some series of shitty boxes.

When a parent says that they have to give up on the hope of a certain milestone what I hear is that they wish their kid could fake it like I can, and what they don’t understand is that they are hoping their kid can be in pain like I am. When they say that quality of life isn’t enough, they are prioritizing their own need to be normal or to have certain wishes fulfilled over the happiness of their child.

What I want all of the parents who say those things to know is that I have reached the milestones. I’ve hit the goals that you dream about for your parents. And the way I did it was through pain. It was by trying not to be autistic. It’s hard to explain exactly WHY all the things that went wrong did, but here is how I felt while I was graduating from high school and getting jobs and going to college.

I spent seven years of my life actively wanting to die.

I am not exaggerating.

Imagine this for me. Imagine that you wake up. You cut yourself. You refuse breakfast. You go to class. Everything hurts. It hurts to not cry for the hour that you’re in class until you can escape somewhere and curl up in the fetal position and wrack with sobs. You refuse lunch. You try to make your body work out even though it hurts, it all hurts, it hurts all the time. You cry like other people don’t, like it feels as if your throat is trying to pull itself out of your body. You get shooting pains down your arm. You wonder when it will happen, when your heart will give out, when the razor will go too deep. You hope it’s soon. You don’t know if you can make it another day. Just staying awake feels like the most gargantuan task in the world. EVERY. SECOND. Every second feels like the worst emotional pain you’ve ever felt, and it’s a constant desperation to just end it.

Not imagine that because you’re in college and passing your classes everyone thinks your quality of life is perfectly fine. You can speak. You can bathe yourself. You can clothe yourself. You’ve hit the milestones. You’re doing everything you’re supposed to do! You’re the autistic all those autism moms think about when they wish and dream.

Except that being alive is the worst thing that you can imagine. You try not to rip your skin off. You try not to stick your fingers down your throat every night. And this goes on for months and months and years, until you’re so exhausted that you don’t know how to go on. But you do because you’re stubborn and you know that the rule is you don’t quit things that you’ve said you’re going to do, so you keep getting up and doing it again even though more than anything you want to die, you want to be done, you want your head to be quiet and calm and easy and you know it will never be.

I can’t say for certain that the reason my life was hell was because I was trying to have more than quality of life, but that sure as hell is my hunch.

When you say that quality of life is supposed to be enough but it’s not you’re telling me that you would rather have the kid who can go to college even if they want to die than the kid who will need intensive supports but may be happy as a clam. And that’s fucked up. I’s so fucked up. Quality of life doesn’t come from all those damn boxes you want. Do you want a child who’s autistic and not a fucking lawyer or doctor or do you want a kid who’s fucking dead? Because that was the road I was going down until I got adequate help.

Trying to force your kid into the mold of neurotypicality is pushing them into depression and suicidality and all of the shit you should never ever want for your kid. And yes, those milestones that are so important to you? Those are asking for neurotypicality. It’s asking your kid not to be who they are.

JUST STOP. I don’t fucking care if you’re trying to be real or open or whatever fucking shit it is that convinces parents of autistic kids to have these conversations, stop saying that you wish someone would come and fix your kid because I can hear you and I know that what you want is for me not to be myself. It tells me I’m not safe around you, that I have to keep masking, that I can’t rest.

If you have to say and think those dark, hard thoughts, don’t do them on the internet where your child might one day hear them or where people just like your child will hear them. How DARE you say that you wish he could have more than quality of life?

I would trade every accomplishment I have ever had to have had any kind of quality of life for the years that I was masking. I would give up my college degree and my voice and my job if I knew that I wouldn’t ever feel that way again.

And I’m here bawling because I saw another video of another mom who wants her kid to be fixed and all I know is that even the people who compliment me in public, people I know, people who have spoken to me about how talented and accomplished I am, they don’t want me to be who I am. They don’t want to see when I meltdown and go nonverbal, they don’t want to see the scars, they don’t want to know that getting here almost killed me and it’s people like them who did it to me. They want me to keep pretending, and they want their kid to pretend too.

I think that I would encourage those parents to keep certain thoughts in therapy to be honest. I completely understand that sometimes you have to grieve for your ideas of what you thought the future would be. I’d feel a lot better if parents said something like that instead: “I had an idea of how life would go, and it clearly isn’t going to go that way, and sometimes I’m sad about that.” Because that’s about THEM, not about their child, or their child’s abilities, or their child’s well being.
The most important piece here to me is that all the best intentions in the world are still harmful if you don’t pay attention to what will actually work for your child. So even if you want to help them but your idea of a good life always involves college you can actively be harming them by trying to help. I would encourage parents to listen very carefully to their kids, to adults on the spectrum, to other kids on the spectrum and pay attention to what they express they want rather than focusing on the parental idea of what “good” or “normal” or “right” is.

I think most parents (and kids too) buy into the (ableist, among problematic in other ways) idea that your life is a failure or at least not “worth” as much if you’re not traditionally successful, and that not being able to reach certain specific broad categories of educational achievement, employment, and independence. This is harmful in pretty obvious ways to anyone who can’t or even just doesn’t wish to reach those things – anyone who doesn’t or can’t have those same goals.

At the same time, most people who think about it know that quality of life is vitally important. You write about parents who say “that quality of life just isn’t enough” and then ask them: “How DARE you say that you wish he could have more than quality of life?” – I think the whole thing behind the “more than” though, is, in the most charitable cases, tht they would know that quality of life is the baseline needed, and THEN you add more on top of it, so it’s not hoping for a college education AT THE EXPENSE of any happiness for their child, it’s that they want their child to be able to NOT be suicidal AND at the same time be able to get a college degree. If they had to choose just one, and they were honestly understanding that choosing just the college degree meant their child would be utterly miserable/in a state of torture/at risk of suicide/etc, I would hope that a high percentage of parents would choose quality of life as more important.

But I know from stories that parents of autistic kids way too often suck, think of their own desires as all that matters, their children’s accomplishments as reflections on themselves and their children as dehumanized/people who’s desires don’t even come into the picture or matter to them (or they don’t realize their children have that range of emotional capacity??)…

It seems like a far-too-large number of neurotypical parents of neurodivergent children are completely unable to realize that their children are neither objects, nor extensions of themselves; but fully human beings – separate from their parents in physical being and in personal identity. The callousness, selfishness, lack of empathy, and apparent lack of theory of mind displayed by these supposedly ‘healthy’ individuals is upsetting to me on a deep level.

Thank you, Aut of Spoons. I admire you. You put words to my experiences. I have been at university. I have a degree. But for each year of university, I paid. Oh how I paid. I’m still paying. Thank you again. Please feel free to delete this comment if you find it strikes the wrong tone for your blog. THANK YOU. You are a freaking superhero.

This post brings up a few thoughts. I understand that your experience with high functioning autism has been painful for you, but that the most painful part is feeling you must conform to neurotypical life. I can see through your writing that it pains you to hear the parents of other autistic children wish for ¨something more¨for their more severely autistic children. In many ways, I agree. When a child is ¨functionally disabled¨and is able to have meaningful relationships, hold a job, go to college, pursue their interests, etc. that wanting to ¨fix¨ that person is overkill and not necessary. I do not have autism, but I am hard of hearing and partially blind in one eye. None of this impedes my ability to lead an independent life and I would be upset to overhear my parents saying I could be more or do more with full hearing and sight. But I know my experience does not speak for the entire hard of hearing and ¨blind¨community. I know many people like me who do feel they could have an improved quality of life without the hinderance of their disability. A friend of mine has a severely autistic son. He cannot feed himself, use the bathroom, dress himself, or express himself in any way. He is non verbal and cannot sign. I know she would do just about anything to give him the ability to express himself, to be able to have some independence, etc. not because SHE doesn´t want or love her son as he is, but because she would love to ease some of his frustrations that come directly from not being able to express himself. I don´t believe that all parents of disabled children are being selfish when they wish their child could have less hardship. However, I do think that it is a thin line and that there is a difference between wanting to ease your child´s legitimate suffering and just wanting to change your child because they upset or confuse you by being different.

I certainly agree that when someone says they want to improve quality of life or make things easier for their child that that’s reasonable. But when a parent straight out says that quality of life isn’t enough, or specifies particular things that they wish their child could do (not because the child has said they want it, but because the parent wants it), that’s when I get frustrated and feel like it’s not really about the kid’s best interest. I agree it’s a tough line to find in many cases, but I absolutely encourage parents to think more carefully about why they want certain milestones.

Thank you for writing this. I haven’t received my diagnosis. Not sure if I’ll pursue it… it seems like a lot of work and taxing of executive function, but, after 55+ years, I’m letting myself take off the mask more. It’s a relief. It’s freeing. It’s sometimes terrifying. Your advocacy cheers me. Thank you.